See our children's and young people's websites
We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
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Updated January 2010To be reviewed January 2012
Comments: read the 10 comments or add yours
Comments
My beautiful son Sam is 9 and about 4 weeks ago started to have minor episodes where he struggled to catch his breathe, it looked similar to being winded during sport and accompanied by salivation on many occasions. These episodes have increased to the point where he has been having them up to 20+ times a day, hiding then from me and his mum and his school friends due to embarrassment. During these episodes Sam is conscious and very aware of what's going on but they culminated on Sunday just gone to a full seizure which ended in a 999 call and an emergency visit to the local casualty department. Prior to this we had visited our GP who dismissed these episodes as anxiety attacks. After the seizure my son was admitted to a ward and basically monitored for the day, examined by 3 doctors who were stumped. Eventually he was released even though we protested that it was a night that these episodes were untenable. We had taken to swapping Sam into our bed and in doing so realised these episodes were more sever at night. The night after being discharged from hospital Sam had another seizure, it was less sever and we then started researching private institutions where we could get some attention and a diagnosis. We are now at the stage after a week of tests MRI, EEG and a partial 48hour telemetry where Sam has be diagnosed with epilepsy. There was found to be abnormal activity in his right temporal lobe and today we begin medication to find an appropriate balance. They want to put Sam on Carbamazepine. My wife and I are very scared. The notice boards sometimes help but also show cases of horrible side effects. We know we need to get Sam treated but would appreciate any feedback that could help inform us more. Someone out there must have had similar right temporal lobe abnormalities and can give us some of their experience. Sam is handsome, popular, funny and amazingly sporty. All he wants to do is come home from hospital, play football for his team and be normal. This is all incredibly upsetting and moving so fast that help in making the right decisions would be a support. A worried, scared set of parents.
Hi Paul
I’m sorry that Sam has had to go through so much before finally getting the right diagnosis. Temporal lobe epilepsy can be difficult to diagnose because the symptoms can easily be mistaken for anxiety or panic attacks. If they are related to epilepsy, these events are partial seizures. Often, it’s only when someone has a recognisable seizure that the relationship between anxiety/panic attacks and epilepsy is considered. That’s why it’s really important that any child who has a possible seizure is referred to an epilepsy specialist.
It’s understandable that you are concerned about giving Sam the carbamazepine. However, it is a well respected first line drug for treating epilepsy. It does have a long list of potential side-effects, but then most medicines, including over the counter ones, do too. This doesn’t mean that everyone will have all the side-effects. From our experience of talking to people with epilepsy, the most common one is tiredness, particularly when it is first started. As your body gets used to the drug, the tiredness usually wears off. If it doesn’t, there’s a list of other anti-epileptic drugs that could be tried instead.
Although it’s difficult to start giving Sam drugs, it would be worth considering how he would feel if he carried on having seizures. As you say, he’s a very active boy, and wants to be just like his friends. The carbamazepine, or a similar drug, could help him to do that.
If you would like to talk to an adviser about your concerns, please feel free to call the Epilepsy Helpline freephone 0808 800 5050. Or, if you would prefer, email them on helpline@epilepsy.org.uk. You could also join our on-line community, to speak with other parents.
Kathy
Advice and Information Team.
Our 10 yr daughter has been diagnosed with c.a.e. (childhood absence epilepsy) since March 2011, she has had an eeg, she has been on medication and nothing is working , she started on Keppra , lamotrigine , had to wean her off keppra because it wasn't working and to start another medicine now she has just started epilim which is sodium valporate, the Dr said that i would see an improvement in 3 weeks , well she has been on this for 3 weeks and no change ! My daughter has 40+ seizures a day , i have asked is there any other test that could be done and i get no there is'nt. Hope there is another medicine out there which will stop her seizures , which we haven't been given yet for a trial .
Jenny,
Two of my 3 children have been diagnosed recently with absence seizures. My 8yr old daughter is medicated currently on ZARONTIN, otherwise known as ETHOSUXIMIDE. She has been on this medication for a little over 2 months. She started at half a tsp. in the am/pm and is now up to 2 tsp in am/pm. Overall, she is doing well with this medication. She does complain of some stomach pain, which can be a side effect. The medication has helped drastically, as I do not see any physical signs of her having any seizures since being on the full dosage. Perhaps this is a medication that you could talk to your doctor about. I can tell you that I have to call the pharmacy to have them order it in about a week before needing more. I had to go to 4 pharmacies to find one that finally had it without waiting several days. She started on the liquid form and since she does not like to take ANY meds, she has asked the doctor herself to give her the pill form. When we change this week, hopefully the pill will work just as well. My other child does not currently need to be medicated, as his 2 eeg's were abnormal, but is not showing any signs physically of seizures. I hope all goes well with you finding a medication that will be helpful. Best wishes-
Jennifer
Hi all,
My daughter was diagnosed with JAE and photosensitive epilepsy last may, she was 7, she has what i used to call "stop doing that funny thing with your eyes Louise" i had no idea it would turn out to be Epilepsy!!
she was having them since maybe the age of 4, we just didnt realise until we went to see headteacher cos she was so far behind with school work and her confidence hit rock bottom... she was having absences at least 5-40 times a day.
she has been on Epilim sodium valporate in last may and so far hasnt reduced them much cos we were having a real struggle of getting her to take it, i tried a bit on my finger and it is disgusting, we have recently changed to graules which we put into yoghurts.. so fingers crossed this starts to reduce her absences.
im not sure if anyone else has trouble getting their kids to take it? but just dip your finger in and understand why not haha... and maybe there is another solution.Take care :)
Hi, just wanted some advice! My little girl is 3mths old and was brought to hospital 2 weeks ago having fits - classic infintile spasms!
After having 3 EEG scans we have been told its not infintile spasms its epilepsy!
She is now being given phenobarbital twice a day, but the fits are still happening!
We have been told that each time the do an EEG the results are showing improvement, but do we continue to treat as epilepsy even though the fits look like classic infintile spasm?? Really need some advice!??
Hi Lisa
This must be a confusing time for you. I believe infantile spasms have a very specific EEG pattern called hypsarrhythmia. If your daughter’s EEG doesn’t show this pattern, it may be why her doctors are saying she doesn’t have infantile spasms. However, that doesn’t mean that she doesn’t have another form of epilepsy. Phenobarbital is often given to young babies with epilepsy. It is usually started at a very low dose, and then gradually increased until either the fits stop, or the baby can’t tolerate a higher dose. Then a different epilepsy medicine will be tried.
Seizures in newborn babies are often difficult to recognise. This is because their seizures may be very subtle, just being changes in breathing patterns, movements of the eyelids or lips, or bicycling movements of the legs. They may also be brief jerks, or episodes of stiffening of the body and limbs. The jerks are called myoclonic or clonic seizures and the episodes of stiffening are called tonic seizures, or, sometimes, spasms.
It’s very difficult to be able to offer any more specific advice through the website. If you would like to discuss your daughter’s situation with one of our trained advisers, please contact us again. You can do this by email: helpline@epilepsy.org.uk, or on the freephone Epilepsy Helpline (0808 800 5050).
Kathy
Advice and Information Team
Hi,
My son is going to be 1 next week, and he was diagnosed with epilepsy offically in December, when he was started on epilim.
When he was first born his limbs use to shake(jerk) the midwife told me that it was his nerve endings forming and that he would grow out of it. When the health visitor took over she reffered us immeidately to the peads consultant, who arranged an EEG which came back as normal. My son had his first fit in august last year, we were walking around boots and his head started going from left to right and his eyes just rolled around, he was unrepsonisve and his arms and legs were lifeless.... This carried on for several months until the treatment. He has generalised epilepsy, He had an MRI approx 5 weeks ago which was all clear thank god!! I am trying to find him a pillow which is safe enough for him to sleep with, if anyone can sugest anything! :) Many Thanks
Hi Bethan
Some people use Sleep Safe pillows. But research is mixed on whether they provide any extra level of safety. For general information on safety equipment, you could contact the Disabled Living Foundation.
Hope that helps.
Cherry
Advice and Information Team
My daughter is 4 and half and last June had out of the blue had a prolonged seizure whilst in Germany. She began by staring and then was sick and became very sleepy and unresponsive for about an hour was taken into ICU and Cat Scan, Lumberpunch, MRI, EEGs all been done on her there was some partial slowing of spikes on one EEG but they werent sure if that was due to amount of medication given as they discovered a slight infection. We had flown there and was first time on plane and she was very excited and not had much sleep. Since then she has had about 7 episodes none lasting more than 4 mins unresponsive and has been prescribed Tegretol last week. She tends to go very pale, eyes roll up and lately her lips have been tinged blue, she is sick and then just wants to sleep it off. Usually after a sleep she is fine again am so worried as never know when they are going to happen anyone else in this situation? Paedtrician doesnt think it is over exhaustion as they tend to happen when she has not slept well, over done it or sometimes when been ill.